Starting Chemo in May 07

Sarah,

Consider me another sister elephant holding you up.

I agree with what I read somewhere else re: your situation - that the chemo couldn't have worked yet (that's why we have more than one tx) but that it soon will. I've also read (somewhere) that having radiation along with chemo is supposed to be more effective than doing them seperately.

I can totally understand how scared you must be, but I think everything will be okay - that they just found this last nodule later and that it is in fact, not new just not detected. Now that it is, of course it will be toast because your treatment plan and your strong and beautiful self will overcome those cells!

I wrap my trunk around you in a gentle hug!
Mandy

Liz, you took your Emend and your Decadron, right? For me those are the Must Takes per the doc, and the Compazine and Ativan are the as-neededs. I didn't take Compazine today but will tonight before bed, along with the Benedryl which seems to help.

I got an order from Hat & Hair - a baseball cap with hair that fastens inside it. It's funny. I can wear it in ponytails or braids and it looks darn real. This hair stuff is pretty fun, actually, as I do really like me with NO hair, too.

Lunch time for me... gotta stay on top of the eating thang!

Hugs,
LeeAnne

Hey LeeAnne, I've been taking Decadron, but today I felt ok so I thought I would wait. They also gave me a prescription for Zofran but said to wait and see if the decadron worked first before taking it.

I think I'm going to get another shorter fun wig. I bought something pretty close to my own long hair--actually my hair on a good hair day. There was another wig--a bob, blonder than mine, with bangs that was very fun and cute and will be good for summer. We get to try things that we could never do with our own hair which does make it fun.

I'm getting hungry myself. Need to go eat a little lunch.

Cindy--I'm in Mission Viejo! Where are you?

Hi everybody,

I hope it's not bad if I jump in here--I know you've been bonding for the whole month. It's just that I'm getting pretty low with this chemo thing, and could use some chemo-sisters to help me along! And hopefully I can do the same for you at times, too. My name's Amy, and Amya and I have been messaging a bit because of similar migraine responses to Cytoxan in a previous treatment.

Anyway, I'm doing FEC X6, and just had tx #2 on Thursday. First time around (on 5/10) was awful--I ended up in the ER with severe vomiting and HUGE headace, and had to get fluids and new anti-nausea drugs plus morphine. Next day at the onc's office I got more fluids, more anti-nausea, more morphine (which didn't help the headache) and finally Imitrex, which took the headache away.

So this time around my onc changed my anti-nausea meds--took away Aloxi which he felt gave me the headache, and added Emend. I didn't have the huge headache this time, which was an improvement, but still had vomiting and nausea and ended up in the ER again. More fluids, this time they added Zofran too, and sent me home at 5am. Went back to the onc's office the next day and got more fluids, Kytril, Zofran, morphine, you name it! And they sent me home with an anti-emetic pump that automatically dispenses anti-nausea drugs into my port at regular intervals. If I feel I need more than what it gives me automatically, I can push a "Dose" button and get more, up to 4 times per hour. So far I'm doing OK with that, although you know how loopy all that stuff makes you! I'm hoping that by Monday I can get the thing taken off and make it OK on my own. The bigger question is whether the pump will keep me out of the ER next time around. If not, they said they might have to give me chemo as an inpatient. Good grief!! I'm really hoping it doesn't have to come to that.

That's probably WAY more info than you all wanted to know! I'd love a brief run-down of who all is here, so I can maybe get to know you a bit at a time. Would you mind posting and introducing yourselves? My sig gives the basics about my dx, but I'm happy to answer any more questions you guys have. I'm a stay-at-home mom to one 2- and one 4-year-old, and have a fantastic husband helping me through this.

Love to all,

Amy

Hi Amy, I'm LeeAnne. Had my 2nd DD A/C on Thursday and have done pretty well so far. I get my Cytoxan slowly in order to avoid the sinus/migraine effect, did okay this time. Have Emend/Decadron, also Compazine and Benedryl as needed which I've only taken at night. I'm 45, happily divorced for 4 years, have a 12 year old boy and a 9 year old girl who are at their (very supportive) dad's for my entire week following chemo. My lovely 70 year old parents have made the commitment to be with me for all my treatments and the 3-4 days following so I feel very lucky. I work full time but my office has been really good about me being gone Thursday/Friday (and into Monday if I need it) every other week.

I hope your docs can figure out the right drugs to counteract your side effects SOON! What you are going through is so difficult. Being loopy isn't the worst thing though. It's better than throwing up!I'm glad you have a supportive husband.

Vent to us, we're here for you. Welcome and I hope things get better for you.

Hugs,
LeeAnne

Hi all, Hope you had a good weekend so far.
Liz,,,,,,,,,,I am in Santa Ana,,,,,about a 1/2 mile from South Coast Plaza. I go to an oncologist in Irvine for my treatment.
Amy,,,,,,,,,,,you are welcome to be here. For me its been great because I like to see if we all kinda experience the same side effects and all. Good to compare notes and maybe we can gather some helpful hints from each other.

Went to a wedding yesterday,,,,,,and it was my second time out with my wig on. Ok,,,,,,,,I felt a little weird at first,,,,,,,I just thought everyone knew that I had a wig on. Lots of young gals came up to my dauther (my daughter was in the wedding) and said,,,,,,,omg your mom's hair looks soooooooo cute,,,,,,,did she get it cut and highlighted? My daughter said yes. lol Then later on at the reception this one young gal came up and said,,,,omg your new hairstyle is so cute,,,,,so I said thank you,,,,,,,,,,thennnnnnnnnnnnnnn she moved her hand closer to my head as if she was going to rub her fingers thru the sides of my hair. Soooooooooooo I said,,,,,,,ummmmmmm please dont do that, do nottttttttttt mess with the "do". lol She kinda had a little surprised look on her face and then I finally told her that it was a wig. She proceeded to tell me how super good it looked and she had no idea. She knew that I had been diagnosed with breast cancer but then heard nothing more about chemo or anything so she didnt know. I said it was ok,,,,,,and I thanked her for the compliment about the wig and thats why I kinda freaked out when she started to touch it. She totally understood and apologized but kept commenting on how real it looked. Its still a self confidence issue I have,,,,,,,,,it's like you can feel something on your head and you feel like it totally stands out as a wig. I guess in time I will get used to it,,,,,,but still new to me. I ordered some scarves and a hat from headcovers.com and I am hoping they come quickly as the wig can get kinda hot. If I'm just hanging out at home I really dont want to wear my wig.
Tomorrow I go for my 2nd treatment. Should be interesting to see how my body reacts to the whole dosage at once (remember I was the weekly gal) lol I just hope I have more good days than bad doing it every 3 weeks. Just the thought of being done on Aug 25 (to be exact, but who's counting, lol) instead of into October makes me excited. Well gotta run,,,,,,,,,,have a good rest of the day
Off to a baby shower now,,,,,,,,,,,,,when it rains it pours,
Cindy

During my dose-dense AC/Taxol in 2005, my brows and eyelashes thinned quite a bit but didn't fall completely out until a month after my last chemo! That happened to several people in my group, but I don't know how common it is.

I have very thin eyebrows to start with, but there's a big difference between almost no eyebrows and NO eyebrows! For one thing, soap gets in your eyes in the shower. LOL And more dust and stuff gets in your eyes without eyelashes.

But it didn't take long for them to grow back. In less than two weeks, you could see baby eyelashes lined up like soldiers returning from war.

Quote:

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4 days out from chemo #2 and a little stupid in the head feeling (note I can't figure out the day exactly...)

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Hey LeeAnne and everyone, Do you think the side effects are better or worse this time? My onc said that #1 is the worse, although I'm not sure I believe that. I am on day 5 of tx 1 and am feeling good--not 100% but good--and I'm afraid that next time will be worse.

And did you start to feel better the second week? What were days 6 and beyond like? Did you get tired, did your wbc's drop at some point? Can you tell when they drop?

Thanks--hope you're feeling better today. Your hair is really hanging on! I think I'll wait for a little while before I shave, but I've been so hot that I'm kinda looking forward to it.

Hi Liz,

I get so tired of hearing people say "Everybody is different" but I'm starting to see why they say it! Mostly I've heard that the 1st tx has the worst potential for nausea/vomiting, then they get that under control for you, and subsequent treatments become more exhausting as the chemo builds up. But for me it's been a little different so far. Tx 2 was just as bad as #1, and I'm definitely more exhausted this time, but this may be due to the drugs pumping into me to help with nausea. It sounds like you're doing great so far! And that's a good indicator for future tx's, I think.

For me, my counts dropped WAAAAAAY low (we didn't do Neulasta the first time) so I felt a little better at about day 6, and at day 13 I was WIPED again--could hardly function for a day or two. I had my counts checked on day 12, and my onc said they would probably drop a little further before coming up, and sure enough the next day seemed to be my low point. Then I pulled out of that and felt decent by the time of tx 2. Not fully up to my usual energy level, but the best I had felt since the time of the first tx.

Did you do Neulasta, Liz? If so, have you had any side effects from that that you can tell? I got that shot this time, since my wbc were ludicrously low at nadir, but so far I don't notice any side effects. Fingers crossed!

Amy

Amy, I've been giving myself neupogen shots since the day after treatment. I have to take it for 5 days after each treatment. No side effects that I can tell. It would be helpful if everyone reacted the same and then we would know what to expect, but I'm shocked how much harder some of the girls have it. I'm definitely not my normal self, but better than many it seems.

The worst thing I'm experiencing is high heart rate and trouble sleeping. The xanax helps with that, but with all the drugs I'm taking I try not to take stuff if I can avoid it. Last night I woke up at 2 in the morning and just couldn't handle staying awake so I took it. I am needing to lie down to rest in the middle of the day, but not necessarily sleeping. I enjoy being able to sleep when I can, but the xanax is habit-forming and I don't want to have to increase my dosage.

Ok this is day ummm let me count again 6 of treatment 2. I didn't post yesterday but I felt good and I felt good all day today. I went to a singles dance with my mom and 2nd cousin last night and didn't get home until about 2am course I had an hour and half drive after the dance was over but it was alot of fun. I think the physical activity of dancing was good for me. I thought I would be sore today cause I hadnt really done anything physical for about 2 months but I felt awsome today. We had a bbq for my son for his 19th bday. LOL he did the bbqing cause he's good at it.
I had my treatment on Tuesday and the Nuelasta shot on Thursday cause they didnt have it on Wednesday when I should have gotten it. It didn't really bother me. I was a little achy on Friday and some Saturday morning but got out and helped walk dogs at the local shelter Sat morn. I think being active helps you feel better. I'm a para for summer school and we start tomorrow. It's half days Monday thru Thursday, I'm looking forward to it.
Depending on the kids that are there I may have them be a part of shaving my head. It's starting to fall out more and more the last couple of days. We are getting batteries for the camera tomorrow so we can take pictures. I want to have pics along with the written journal. My kids think thats a good idea.
OK I do have a question and I almost forgot. Since my hair has started thinning (I have really thick hair) I have sores on my scalp. It itches and when I scratch I can feel like scabs or something. I've always had dandruff really bad just never had sores (well except when I colored my hair and it turned out bright reddish/orange and I colored it again right away). I'm using the same shampoo and conditioner as before and haven't changed the way I style it. I'm not blow drying anymore cause the hair would just blow away so I wash it, gently towel dry and brush it, then leave it alone.
I feel like I'm rambling so guess I will get off here and go to bed, its 1145 and I have to be up at 630.
Have a great night and day tomorrow,
Hugs and this sister elephant is leaning against all up for treatment in the next couple of days and who have just had treatment.
CindyKS

Amy: I go by CindyKS cause I'm from Kansas and I'm the 3rd Cindy in the May group. Welcome!!

Hi everyone,
I'm a newcomer and would like to be added to the May list.
I just finished and survived my lst chemo tx. (taxotere,ad
riamycin,cytoxan). I guess I was surprised (maybe I shouldn't have been) at how late new symptoms can come on.
The 1st few days weren't bad. It was the next 7 that weren't too fun. I'm doing much better the last couple of
days. Just waiting for my hair to fall out at this point.
I'm prepared with a wig, a couple of caps, bandana's. My
5 y.o. says he wants to wear his own bandana on the days
I opt for that look. He's very sweet.
Smiles,
KKJ

Hi girls,

I wrote a post earlier but it didn't work--used a browser that had been open too long, I think. Anyway, I got off the pump today, and we'll see how it goes. I just finished a long nap, and want to just lie here for another 6 hours! But I'm supposed to teach 3 violin lessons tonight, so I'm going to make the attempt.

KKJ, welcome! My first post was just a day or so ago, so you can read that and be all caught up on my woes. I'm not a "sail through chemo" girl at all! My hair is all gone--started falling out day 15 and I had hubby shave it on the evening of day 18. It felt SO much better after he shaved it. It really hurt while it was falling out, especially that last day.

Mandy, sounds like you're doing well with FEC. Good for you! Maybe my 3rd time will be the charm and I can escape the ER.

All for now,

Amy

Liz, I haven't had "smooth running" in days! I'm on the constipated side anyway, and I've eaten very little for the last few days, but this was typical for me last time around too. It seems like some people have diarrhea, and some go the other way. I take some stool softeners sometimes and that helps. Amy